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How do you feel about being at risk?

Canada
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Young adults Forum support

Hey,
It was probably a little bit confusing at that age. Was she showing symptoms or did she decide to test? How is your mother doing currently?

Cheers,
Chelsie

Australia
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Young adults

At the time I didn't notice any symptoms, probably because I didn't know what to look out for. But looking back on it now she was showing some degree of symptoms. But she didn't start showing any major symptoms until her late thirties. At the moment she is ok, we are just trying to get her a carer. Because she doesn't have any family and no one to help take care of her.

Canada
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Young adults Forum support

Hey Shanzo,

Have you been in touch with your local chapter? They are a great resource for your entire family. They may be able to offer some support and they have experience dealing with HD cases so they may offer some different options.

Cheers,
Chelsie

Australia
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Young adults

On these forums, I read a lot about several family members having HD. In my case, my mum is the only known person in our family. Her parents do not have it, neither does her sister. Further than that, I don't know. My grandparents migrated from Greece in the 1960s so I am not sure if previous family members had this (and with the lack of knowledge in a small village in Greece, I doubt they ever would've known). Is it possible for HD to skip generations or is it a direct parent to child link?

Canada
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Young adults Forum support

Hey Lamby,

The classification for HD is relatively new. I am not sure if HD can skip generations, I would suggest that you talk to a genetic counsellor for more accurate information. We can help you get in touch with someone who can answer your questions, would you like that?

Cheers,
Chelsie

United Kingdom
Life is to be lived
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Young adults Forum support

Hey Lamby,

Technically, no HD doesn't skip a generation. But sometimes people may have relatively low CAG repeats, although still enough to have HD, but never develop symptoms of the condition because they may pass away before then. Appearing that they have gone their life without having HD. In this case the person did have HD so the risk is there for the next generation.

Another example would be a person who has a CAG repeat very high up in the negative range. They would not have HD themselves but there is a small chance their CAG repeat may increase enough in the next generation to put them at risk. But this apparently isn't so common.

Hope that helps
Matt

Italy
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Young adults

Hi everyone, I'm Marta ,I'm 26 years old and I've just lost my dad for HD. It's the first time I speak with someone who's not in my family. This topic has been a taboo till my father's death, and it still is in someway. Now I feel like a pressure cooker and I think I need help. My mother is trying to be really helpful with me but I just feel anger and I think I'm not able to talk to her. Now the situation has become untenable, I feel mad at all the world. I'm no longer able to live everyday life, I try to keep everything under control in really paranoid way and I was wondering if someone feels the same.
I do thank you for listening. Cheers from Italy!

Canada
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Young adults Forum support

Hi Marta,

Thank you for sharing your story with the group. You’re very brave! I’m sorry to hear about the loss of your dad. I lost my mom from HD 6 years ago, but it still feels like yesterday. Do you have anyone you can talk to? It really helps if you do. We could try to connect you with an HD counsellor in Italy if that would help you. Please let me know! I think most people feel the way you’re feeling right now, like you’re mad at the world. It’s a very normal feeling after losing a loved one. In what ways have you been coping since he passed? Counseling, yoga, meditation, etc. are always helpful options.

Cheers,

Ally

Italy
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Young adults

Hi Ally,
first of all I do thank you for your reply. I'm really sorry about your mom, I can understand what you mean. Sometimes I wish that my father's death had just occurred in few days ago (instead of months), so I could cry and despair out loud without making problems about what people think. I don't know If I'm clear, but I have lot of confusion.. in the lexicon and in my heart! :) The thing is I was working so hard and now I've lost my job, so I'm thinking about it every single moment. My mum is really trying to help me but, I really don't know why, I'm grumpy with her, almost as if I was angry with her too. My sister has just moved and will be married in a few months, we have really fantastic relationship, but in the last few months I'm not talking even to her. And it's all my fault!!!I'm trying to keep in touch with the HD organization in Italy but It's far from my place and I'm not able to reach them a lot. Do you think it would be helpful for me to get therapy by a psychologist, though not specialized on HD? Now I'm trying to do lot of Sport and keep me busy. I made a video about him and it's good 'cause I had forgotten how my daddy was before getting sick.
I really would like to keep in touch with you guys,

Thank you Ally, you are so kind!
Marta

United Kingdom
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Young adults

Hello, I am 19 years old and since I turned 18 I have been wondering whether or not to get tested for the HD Gene. My grandmother died when she was just 30, she had Huntington's disease and also had a stomach ulcer. My auntie also died when she was 30, she had Huntington's and was schizophrenic. My mother has been living with this disease since I was 6 years old and she was about 26 years old when she started developing the symptoms, she is now 39. I grew up basically being my mothers carer and watched her deteriorate to the point where she has now been in a care home for several years, bed bound with no control left of her body. I sometimes feel that it is pointless going to see her as she never knows when I am there, even though I talk to her. I have seen what Huntington's does to people and I am worried about taking the test. I feel like I am 100% going to have the HD Gene and get the illness. My older sister has taken the test and she has the HD Gene, which makes me even more worried about taking the test myself. I really hope someone can give me some advice on this, it would be greatly appreciated. Thanks.

Canada
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Young adults Forum support

Hi Marta,

How you’re feeling after losing your dad is very normal. A lot of people feel frustrated and angry, and it’s okay! It will take time. I know it’s hard to open up and talk, but keeping your mom and sister close is important :) They really understand what you’re going through, and I’m sure they need you too!! I think being open about how you are feeling, even towards them, is a good thing to do. How do you feel about doing something like that? With regards to talking to someone not specialized in HD, I think it’s a great idea. Even if they can’t relate to the HD aspect, you are still dealing with a loss, and it can be very helpful to talk to someone, especially someone completely unrelated to the situation. You should give it a try! That’s great you made a video of your dad. Now you and everyone else will have great memories that you can re-watch any time you want. Priceless!

Cheers,

Ally

Canada
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Young adults Forum support

Hi Irmuska,

Welcome to the HDYO forum, and thanks for sharing with us! It seems like you are very confused about whether or not you want to get tested for HD. That is a very normal feeling to experience! A lot of people go back and forth as to whether they want to get tested or not. Ultimately, it’s a personal decision, and whatever you chose to do is the right thing for you. Have you talked to anyone about how you are feeling? It sounds like you are fairly close to your sister, and since she’s gone through the process, it may be helpful to talk to her. It could help ease some of the worry you have. Have you thought about talking to the HD genetic counsellor in your area? They are great for helping you answer some key questions as to why you want to be tested, how you will react with the results, etc. Let me know if you need help finding someone in your area!

Cheers,

Ally

United Kingdom
Life is to be lived
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Hi Irmuska

You have been through so much with your grandmother, auntie and mother all being impacted by HD at fairly young ages in their adult life. It is very brave of you to share your experiences with us, thank you.

It sounds like you did a lot of caring for your mother before she went into the care home. I can understand you saying it seems pointless visiting your mother in the care home but what I would say is that people with HD generally know you are there, even when they are unable to communicate with you in any way. They can hear you and do follow what you're saying, despite not seeming that way.

With regards to testing Ally has given some good advice. Hopefully some other young people will come along and offer some of their experiences, or check out the testing section of the forum for good discussions on testing. Aside from other people's experiences I agree with Ally that a genetic counsellor is a good person to speak to usually. Many people don't realise you can speak to a genetic counsellor anytime, not just for those who have decided if they want to be tested. They are there to talk through how you feel about testing.

You are very brave, thank you for sharing. We are always here to chat and help.

Matt

Australia
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Young adults

Hello Marta,

I am sad to hear about the loss of your Dad, unfortunately within the HD there are many of us who are grieving over our lost loved ones. This however also means that there are a lot of us here to support you!

Something that I noticed you said was that your Dad was dying for a long time and that you wish that it was quick. I thought I would share with you my own HD story which might shed some light on an alternative situation. My Dad had HD for most of my childhood (about 10 years). In August 2009 my Dad Keith was hit by a car and killed instantly. This was the hardest time of my life and I struggled a lot in proceeding with life. How I see it is that no matter how someones life is lost, we will always grieve and we will never be ready to hear the news. The grass may seem greener but when it comes to death it never is.

The main advice I have to offer is to try and strike a balance between letting yourself grieve and letting yourself live.

I hope this has helped,
Alex

United Kingdom
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Teens

Hi I am 16 and very scared about being at risk of huntisons disease, my dad, grandmar, auntie and 2 uncles have got HD my mum didn't know my dad had huntinsons disease until she was 5 month pregnant with me, I really want to get tested for HD but I know that isn't possible until I am 18, I have my GCSEs coming up next month and finding it really hard to concentrate...
Georgina

Canada
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Hey Georgie,

Thanks for sharing your story. Being at risk can be tough because you feel uncertain about the future. Here is a link to an article that might help -- http://en.hdyo.org/tee/articles/61. I would find someone that you can talk to about how you are feeling and to get some strategies to help you cope until you are old enough to decide if you want to be tested.

You mentioned that your parents knew when your mom was pregnant, when did your parents tell you that you were at risk?

Keep your chin up! Hope this helps.

Cheers,
Chelsie

United States of America
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Teens

It's the worst thing in the world wondering whether or not you have the gene. I think the scariest part is actually finding out, because if it comes out positive all your fears come true. HD stopped me from really getting to know my grandpa, it took my aunt away a few months ago and now it's taking away my other aunt and my mom. I pray to god me or my brother don't have it, but sometimes I drop something or my hands shake and I get a knot in my belly because it feels like my Huntingtons is here.

Canada
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Young adults Forum support

Hey Marissarod04,

Sounds like you are having a tough year. Many people struggle with the decision to test or not. I hope you have support from your local HD group. Here is a link to information about being a carer: http://en.hdyo.org/tee/articles/56.

It is interesting to note that some people feel like the time leading up to testing is the toughest part and getting the results sometimes feels like a relief because they know what to expect moving forward. I think it relies on the individual.

You were very brave sharing your story and we are hear to listen :)

Cheers,
Chelsie

United Kingdom
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Young adults

Hi everyone,

My name is Donnie and I'm 23 years old, living in London. At the time of writing this it's currently 4:38am and my mind has kept me up all night. I happened upon this website whilst trying to find hope, or reason.

My family has a history of HD. My mother passed away when I was 15 and due to the circumstances, I never had the chance to really know her. It had also claimed the life of my grandfather. Both of them were around the age of 50 when they passed.

I've been aware all my life of my risk of having HD and what it does. However, as I reach a stage in my life where I need to think about the long term future, I find myself labelling any twitch or shudder as symptoms of HD. I used to be very slim and athletic, and now I am overweight. I managed to convince myself that this may be linked with Lund's research and that I am showing symptoms of the disease.

I am writing because I seek words of comfort. I've never known or spoken to anybody else at risk of HD outside of my family. Are my worries correct? Or am I being overly inventive with things that happen to everybody, not just HD sufferers.

I would appreciate any help.

Canada
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Young adults Forum support

Hi Donnie,

Welcome! I’m really glad you came across the HDYO website. How did you find us? It’s a really great resource. Have you taken a look around? There is some great information under ‘Young Adults’ that you may want to take a look at. Here is the link: http://en.hdyo.org/you.

Know that how you’re feeling is very normal. A lot of people scrutinize every move they make, every twitch they have, memory lapse, etc. With regards to your weight gain, don’t feel bad about it. It happens. Exercising can be a great stress reliever though and would probably help you feel better :) Just a thought! You can start slow and work your way up.

Do you know of any HD centres near you or counsellors? These can be great options as well for you to learn more, talk to other people, etc. For now, check out the other forums and meet some new people!

Cheers,

Ally